Combatting the isolation of young onset Parkinson's disease

April 5, 2017

PHOTO: Paul Grant said it felt like his life was over when he was diagnosed with young onset Parkinson's at age 37. (ABC News: Ruby Cornish)

Coffs Harbour man Paul Grant thought his life was over when he was diagnosed with young onset Parkinson's disease at the age of 37.

He had been a semi-professional musician and a farmer and one day, noticed he was losing some ability in his left hand.

Mr Grant said it took a long time to be properly diagnosed.

"It's generally the last thing people think of, because Parkinson's is more typical for people in life's later years," he said.

"But eventually, I ended up in Sydney seeing a movement disorder specialist and he recognised it."

One in 5 with condition are of working age

According to Parkinson's New South Wales, the average age of onset of Parkinson's disease is 65, but as many as one in five people living with the condition are of working age.

Mr Grant said he did not let his diagnosis slow him down.

"It's a constant state of compensating for things that happen in your body that you have to work around," he said.

"Out of instinct, I stayed very physically active. I had a cut flower plantation and a gardening run so I was kept busy with that.

"Surfing, running... Doing that to me meant I could carry on."

Searching for connections

Mr Grant said going to regular Parkinson's support groups, where he had been surrounded by much older people, had been confronting.

"For the first eight years of my diagnosis, I don't think I ever met someone else with young onset Parkinson's," he said.

He felt like his challenges were different to those of older people with the disease and struggled to identify with them.

"It's a devastating diagnosis at any age but the young onset group is particularly vulnerable," he said.

"These people have jobs, family, mortgages and kids.

"When you're diagnosed in this period of your life, there's a fair bit of denial that goes with it, and a greater risk of isolation.

"If that goes unchecked it can lead to mental health issues."

Creating a supportive space

After living with young onset Parkinson's for a decade, Mr Grant has set up a support group in Coffs Harbour.

He said the first few meetings have already proven popular and constructive.

"Some people are very nervous about coming out about it [and] really, people just wanted to sit and talk and ask questions," Mr Grant said.

"I pretty much threw out the program and just let them meet each other."

The main message he wants to send to other with young onset Parkinson's is that diagnosis does not mean a bleak future.

"In fact, the last 10 years of my life have been more interesting and rich and surprising than any before them," he said.

http://www.abc.net.au/news/2017-04-06/combatting-the-isolation-of-young-onset-parkinsons/8421102